Topics

Impossible to make her eat
Hello, the girl of my brother who is 1 year and 1 month has cystic fibrosis, diagnosed at one month of age, and since this time she follows the necessary treatment, but unfortunately for at least two months she refuses to eat . The doctors have performed all the necessary examinations, but they found nothing. I think it could be a psychological block, but doctors don’t want to hear about this. I ask you for help to find a possible solution, but also in order to help my brother and his little family. Currently the child is fed by a tube during the night, but as she refuses to eat they start to use tube at lunch, too. Thank you for your advice Regards M.
15.05.2013
Azithromycin
Dear Doctors, Yesterday I heard on the news that azithromycin antibiotics will be examined in America because it would be a dangerous drug. Do you know more about it? Because when I get a cure related to my CF, it is usually this antibiotic. (Also diane35® (hormone containing pill use in case of acne) and domperidone are going to be examined).
15.05.2013
Aromatherapy: thesis about cleaning air with essential oils
Hello, I just wanted to bring your attention to this thesis from the poytechnical university of Lausanne in Switzerland from 2005: INDOOR AIR PURIFICATION AND VENTILATION SYSTEMS WITH ESSENTIAL OILS. http://infoscience.epfl.ch/record/52220/files/EPFL_TH3311.pdf When will medical CF teams be trained on the topic of aromatherapy, in the context of a complementary approach of current medical care? "With a view to proposing an indoor air purification method based on the germicidal and odorant properties of essential oils, we selected: -Pathogenic test strains : Staphylococcus aureus and Pseudomonas aeruginosa -Afnor NF T72-281 protocol for the disinfection of surfaces through the air, which showed the germicidal activity of antimicrobial agents used in gaseous phase -A specific experimental apparatus -Some of the most active essential oils: mountain savory, thyme thymol, oregano (vulgare) as well as cinnamon bark. The protocol was applied to a chemical reference compound of hospitals, the formaldehyde as well as to phenol rich essential oils. We demonstrated that the tested essential oils in gaseous phase do have a lethal effect on all bacteria that have been exposed to them, even in small doses". Thank you
15.05.2013
Contact after transplantation
Hello, my brother was transplanted a couple of weeks ago. I do have CF as well. Since the transplantion I have limited our contact to telephone calls and e-mails. However, in a family, it cannot be avoided to meet each other from time to time (what is a good thing, generally speaking). How should I behave to avoid that my germs (Pseumomonas) could do harm to my brother?
15.05.2013
Inhalation of sodium bicarbonate
Dear expert team, I would like to know in which cases it is recommended in CF to inhale NaHCO3 (sodium bicarbonate), how this is done (amount/frequency/dosage/kg or age) and if this inhalation is done in addition to the inhalation with NaCl-solution or instead of it (i.e. in addition with Atrovent® (Ipratropium bromide) and Sultanol® (Salbutamol)). Thank you.
15.05.2013
CF
My daughter is 4.5 years old. She has been diagnosed to suffer from asthma at the age of 3 years. She is ill very often, every moth at least one time and nearly every time she has a pneumonia! She is spitting then always very much of a thick yellowish mucus that is like chewing-gum. She has had a sweat test last year that had been negative, thank goodness. Now my question: can she suffer from CF in spite of this and would it be better to carry out the test again?
15.05.2013
Elastase: two different results
Hello, My 12-month-old son had last month an elastase assay which showed a moderate exocrine pancreatic insufficiency. 15 days later, a new analysis indicates that there is no failure. Which value should we believe? The only difference between the two tests is the type of diet. Can it affect the results? Thank you
13.05.2013
pregnancy and CF
I would like to know if there is a threeshold FEV1/FVC necessary before pregnancy. What are the other criteria: BMI, hemoptysis, other...
13.05.2013
Bronchitol® benefit
Bronchitol® is proposed to CF patients. Is the treatment added to inhaled hypertonic saline serum/ inhalation with salbutamole or does it subsitue the treatment? What about differences between lipromatase and CREON®?
13.05.2013
chiropractor
My granddaughter is 5 years old. Can a chiropractor help her? She is having breathing problems. She has had 3 visits in the hospital in the last 7 months with low O2 stats.
13.05.2013
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